Things have been pretty hectic here at the home place lately.
There have been numerous doctor visits, a hospital ER visit, an
18th birthday to celebrate, good news to receive, and bad news to
receive.

During all of this I've been wondering, "Have I bitten
off more than I can chew?" in adding my Mother and my
Grandmother to my caregiving activities. I've been feeling
really stressed and the Big G word, guilt, has been hitting me
hard. I've felt bad that I haven't kept my house up to par,
I've felt that I'm neglecting Nanny when at Mama's house and then
I feel I'm neglecting Mama and Grandmother when I'm at home. I
won't even go into how bad I feel about my husband and my son.

Then I had a smack upside my head!! Jamie, you aren't
taking care of yourself are you? I've been running around like
a chicken with it's head cut off doing for everyone else and
haven't done anything for ME. I've been trying to handle
everything by myself and not asking for help.

Now I ask myself, "What is the first and foremost rule of
Caregiving"? It is that the Caregiver MUST take care of
themselves. For the last few days after my awakening I've been
taking a 10 minute break here and there during the day and doing
what I want to do for me in the evenings, even if it's just to
veg out watching TV. I'm also learning to ask for help from my
family.

I think that's the hardest part of all. I've always kind
of been a "supermom" and it's hard to ask your children
to help you do something. I thought I had torn that big
"S" off my bra but obviously it was still stuck on by a
thread.

I'm proud to say that my kids have pulled through for me.
I just need to realize that I need to let them know what I need
done. I have to realize that they have their own lives and
don't always recognize what I need. I cannot be ashamed or
embarassed to ask.

I can now say that for the moment everything is under better
control. My house is still cluttered and dusty but the wash is
done and the kitchen is clean. That's the jobs for next week.
I'm not getting upset thinking I'm neglecting anyone because I
now know I'm not. I'm still trying to get a routine going but
that will work out in time.

So now those of you who feel overwhelmed, don't think you are
alone!! We all go through it and we all will survive it. Life
happens.

Hugs,

Jamie

Virus Alert

As we stated in the last newsletter there have been some virus
problems. We need to tell you that if you receive ANY email from
those of us at The Ribbon that has an attachment DO NOT OPEN IT. Just DELETE it.

What we have found out is that if someone has this virus and
one of our names is in their address book then that person's
virus can send an email out to someone else in the address book
and have it look like we sent it.

We DO NOT send out anything to our readers with an
attachment unless YOU have requested it that way.

We hope there will no longer be any problems with this worm.

The
Ribbon Staff

Alzheimer's Support on MSN

Members
of the site have formed an "Awareness Mission
Group" whose purpose is to work to heighten
awareness of care giving issues and dementia. Members of the site
feel that in-depth presentations of the cold hard facts of the
impacts of dementias on caregivers are in order. The personal
demands on caregivers, disruptions of normal lives and resulting
financial strains can be disastrous.

A major project for the "Awareness Mission Group" is
an e-mail and letter writing campaign to Dateline NBC, the weekly
nighttime news magazine. The goal is to flood the producers with
mail asking them to produce a show or series of shows on this
disease that affects millions and is expected to reach epidemic
level in the near future. The e-mails started on May 27, 2002.
All concerned citizens are invited to join in this campaign.
Simply send your care giving story to
dateline@nbc.com
with a request for a feature on issues related to dementia/caregiving.

Details regarding the "Awareness Mission" are listed
on the links to the left of the Home Page.

The Caregiving Years

by Denise M. Brown

When you expect a child, the community (your family, friends,
co-workers) rally around you and your spouse. When you expect
your first child, you receive gifts, well wishes and the
encouragement that you are entering a wonderful, albeit
challenging, chapter in your life. As you prepare to welcome your
child, you feel pride at the thought of your role as parent: How
you will shape the mind of a youngster, impacting him or her with
your wisdom, insights and knowledge.

Now think about a similar life experience, just one on the
other end of the spectrum. An aging relative, a spouse, a parent,
a grandparent, needs your help. And, you want to help--you
believe in making the most of the years you have left together.
But, when you tell your friends, your colleagues, even other
family members, the comments you may hear are a far cry from
well-wishes. "I could never do that! Why do you?" Or,
the more common response: "Why don't you just put your
mother (or your wife, or your grandfather) in a nursing home?
That way you won't be so stressed out."

With support like that, no wonder you might find yourself
fighting self-doubts during your caregiving journey, asking
yourself, "Why me? Why am I the one to do this?" These
self-doubts can erode your ability to handle your caregiving
responsibilities effectively and efficiently. Even worse, these
self-doubts cloud your ability to understand how important this
caregiving journey is--to your care recipient, your family,
yourself.

Which is why I've developed The Caregiving Years: Six
Stages To A Meaningful Experience. Much like books for
expecting parents, The Caregiving Years describes what to
expect throughout the journey. By having information about your
role as caregiver--you understand what information to gather and
the actions to take--you can spend more time making this
experience meaningful, for your care recipient, your family,
yourself.

The Caregiving Years is separated into six stages, each
stage defined by the number of years spent as a caregiver. But
these definitions were created to use only as a guide. Your care
recipient's illness and diagnosis will determine how quickly or
slowly you pass through the stages. While the length of time
spent in each stage may differ for each caregiver, the emotions
and experiences felt will remain constant.

I welcome your feedback to this concept. And, I'd love to know
what insights, understandings and meanings you've garnered about
your journey because of The Caregiving Years.

Note: I have
provided The Caregiving Years to be used strictly as a
guide. All situations vary. I encourage you to always consult
your health care professionals to discuss your individual
situation and the best course of action for you and your care
recipient.

You have a growing concern that within the next 12 to 18 months
or so, your aging relative will need more and more of your
assistance and time. You're concerned because of your relative's
age, past and present medical condition, and current living
condition.

You expect to become a caregiver; this is your time to prepare.
You should research options, gather information, and provide the
opportunity for your care recipient to share his or her feelings
and values. This is also your time to concentrate on taking care
of yourself--keeping up with family and friends, enjoying your
hobbies and interests, pursing your career goals, taking trips
you've always dreamed of.

Although an immediate crisis may not face you, the threat of one
seems to hang in the horizon. Rather than closing your eyes to
avoid seeing that horizon, you can take some proactive steps now
that will make your future caregiving days easier.

As an "expectant caregiver", what can you do?

1. Consult with a good lawyer familiar with eldercare issues.

Find out about durable powers of attorney for health care and
living wills; start the process to ensure that the necessary
legal papers are in order.

2. Determine financial situations.

Knowing the financial status can help determine future health
care choices. Determine monthly income from pensions and social
security; learn about annuities, stock investments and bank
accounts.

A Tip from Denise:

You may find yourself "taking away" from your aging
relative--the keys to the car, the solo trip to the grocery
store, her hosting the large family get-togethers. To balance the
scales, try to replace what you take away. The exchange may not
be equal (and in most situations, it won't be), but giving back
some of what you take away will help your care recipient maintain
her dignity and independence.

For instance, you feel that it's just too much for your mother
to continue hosting Thanksgiving dinner every year. Your mother
reluctantly relents to having the celebration at your house. As
you plan for the day, try to incorporate some of your mother's
traditions in the celebration: her favorite recipes, her special
dishes, her most honored prayer. While your mother may miss
hosting the tradition at her home, she'll feel that some of her
house is at yours.

3. Investigate community health care options.

What home health care agencies in your area offer quality,
affordable home care? What housing options are available:
retirement communities, assisted living centers? Contact
community organizations to request brochures and pamphlets.

In addition, consider your aging relative's current living
condition. Will your aging relative be able to reside safely in
her home if she uses a wheelchair, becomes bedbound? What changes
can you make today that will prevent future barriers to providing
care in her home? Or, are the necessary changes almost an
impossibility? If so, what other options do you have: your home,
an assisted living facility, a retirement community?

4. Begin discussions with your aging relative about his or her
wishes.

Asking questions now about your relative's care preferences will
help you provide the care your relative wants. Where does your
relative want to die? At home? At a care facility? What type of
funeral would your relative want? Does your relative have a
preference as to whom in the family provides care? How does your
relative feel about end-of-life care decisions?

Although you may not be able to meet all your relative's
wishes, you can begin to plan now to meet at least the most
important.

5. Determine the current health care providers.

Who are the physicians, what is the diagnosis? In addition, learn
about medications and why the medications have been prescribed.

6. Concentrate on the reality of the situations.

Keep a realistic view of their situations: What's the worst that
could happen? What's the best possible outcome? Then, determine
what options are available for each of these outcomes.

You may be surprised at your feelings of loss. Your preparation
of the future allows you to see what your care recipient--and
you--might lose. You both will experience changes in your
relationship, your schedules, your amount of freedom. Write down
your thoughts about the potential losses--and how you might be
able to hang on to them, through minor adjustments and changes,
for a little longer.

Links

** The Disappearing Mind **
By the year 2050, as many as 14 million Americans could be
suffering from Alzheimers disease. With new technology, doctors
can diagnose the condition at its earliest stages in an attempt
to stop its terrifying progression. Will they succeed?

In Passing: Those We Must Remember

It
is with great sadness that i write to share iwth you that I
received an email from Clara or Pacoon that her father passed
away June the 18th. She states she is glad that "he is at
rest and walking with our Creator and Mom."

Please join with me in extending your thoughts and sympathies to
Clara and her family.

I
must apologize on this one folks; this email got past me! In
the first part of June I received an email from Tess or KuuipoTes
telling me her mother had passed away. Tess has only been in a
couple of times to visit with us; however, she has been part of
the AOL chats recently and also AOL chats a few years ago. Tess
is requesting we keep her and her family in our thoughts and
prayers.

Please join with me in extending your thoughts and sympathies to
Tess and her family during this very difficult time.

Either cognitively normal, or mild cognitive impairment
(MCI). If MCI, the subject's CDR at screening must have a
global score of 0.5.

mMMSE score greater than 88 for subjects with greater than 8
years of education, or greater than 80 for subjects with less
than 8 years education, and Free and Cued Selective Reminding
Task total free plus cued recall score greater than 44 with three
learning trials.

Willing to participate in four to five year follow-up study.

Willing to identify person who can serve as study partner, as
well as attend all clinic visits with study participant. The
study partner should be someone who has contact with the study
participant at least twice a week in person or by phone.

Study subjects and their study partners must be able to read
and complete study forms.

INCLUSION SEX
Both

EXCLUSION CRITERIA:

Meets DSM IV criteria for dementia.

History of clinically significant medical illness that would
interfere with participation in trial, including active
malignancy, myocardial infarction, or cerebrovascular accident
within the past year.

Alcohol or substance abuse and/or active major psychiatric
disorders.

Concurrent participation in a clinical drug trial.

History of mental retardation.

PROHIBITED MEDICATIONS:

Antipsychotic agents. These agents are allowed if low doses
are prescribed for reasons other than treatment of psychiatric
symptoms, and the doses are stable for at least four weeks prior
to screening.

Antiparkinson drugs.

Medications for treatment of dementia.

Antidepressant therapy is acceptable as long as the dosage has
been stable for four weeks prior to screening.

Vitamin E in excess of 430 IU per day.

INPATIENT-OUTPATIENT
Outpatient

CONDITION(S) STUDIED
Alzheimer's disease

DESCRIPTION FOR THE PUBLIC
This project will focus on the development and testing of
efficient, cost-effective tests and measures that are
specifically designed for use in Alzheimer's disease primary
prevention trials.

The Gathering Place

I
want to take this brief moment to apologize for the recent
problems which you all have been encountering while at The
Gathering Place. Our chat server has been doing some upgrades
and numerous problems have been encountered. We are working
with the service provider to get these things fixed up and do
appreciate your patience during this time.

Email Bag

I read what you wrote in The Ribbon...WOW, what did the doctor
say exactly in 1998? Was the doctor a neurologist or a
geriatric physician...or your family doctor?

Jane, given what you write about him I am still not sure...does
he still drive when he does the shopping? Given his wish not to
admit to the possibility of having AD, for what reason does he
believe he is taking Aricept?

Your answer to these questions will help better address the issue
of whether you need to tell him or not or even take him back for
the results.

Without further information and generically speaking, my bias
leans toward learning and then sharing his condition...perhaps
you can do it gently and address which of his behaviors might be
enhanced by taking Aricept. Considering he has been diagnosed, he
may no longer qualify for long term care insurance because the
diagnosis is now part of his record (from what I gathered of what
you wrote). Yet, he and you should know so that you can move
forward with your eyes open. However, his diagnosis must come
from a physician who specializes in Gerontology or Neurology to
ensure it is an accurate diagnosis. I know of a few people who
have been misdiagnosed and it has turned their lives upside down
until of course they went to a specialist.

This is all I can offer you now with the information you provided
...beyond this, I encourage you to chat with caregivers who also
walk this road from 9 - 11 p.m. ET at The Gathering
Place...http://www.theribbon.com/gatherplace/